Sunday, June 6, 2010

Time For Change

I am scheduled for another Orencia infusion this coming Wednesday afternoon. I feel that I have given Orencia a fair chance, 10 infusions, and I am not doing any better. As scary as it can be switching medicines, its time for me to try something else. I am disappointed that the Orencia has not worked for me like it does others. I liked not having to give myself injections and the once a month schedule as well. However, if this is as good as it gets, just shoot me now because this is no way to live. I have hurt so badly at work the last two weeks, that I would literally come home and go to bed. The dogs don't understand why I don't want to play with them when I come home from work. My wife (an RN in ICU) sees me struggle just to walk, sit or stand, but I don't think she even fully grasps how intense the pain is at times. I expect my next weapon will be Humira, I will update you after I see my rheumatologist Wednesday.

By the way, in an earlier post, I told you about being allergic to bee and wasp stings. This is today, two full weeks after being stung. It is still tender if pushed directly in the center.

I got out this morning and took my bike for a nice 60+ mile cruise around town. I left the house early and headed over to a lock and dam on the the Arkansas river about 8 miles from our house. I watched some barge traffic on the river before heading on with my ride. I rode mostly dirt roads on the outer edge of town ... it's funny to see how many people were staring at me. Then it dawned on me, they aren't use to seeing riders with leathers, MX boots, chest protector, etc coming through town. It was a nice change of pace this morning, not having to load up and drive 30 minutes to ride.

I didn't really feel like riding today, but I made myself get out this morning, and enjoyed myself once I got about as far as ... oh ...our mailbox. I have been talking with Randall quite a bit about this lately. I am worse than I was two years ago, even this time last year I was still riding quite a bit of single track trail. I am going to try to ride every week while I am still able to ride. I can't imagine not being able to ride, but who knows what the future may bring. I would hate to look back two or three years from now and think, why didn't I get out and ride while I still could?

I'm so sorry these last few weeks (OK, months) have been so miserable RA-wise, Terry. And I know just how bad it has to hurt before you simply come home from work and go to bed, hoping to fall asleep and get away from it. Have you tried tramadol? It's a synthetic narcotic painkiller, not nearly as addictive as Vicoden or Percocet. I take it frequently for my hands, and while it doesn't do much for BIG pain, it does help when the pain is down, say, at a level 4-5 (for me, anyway).

That's some leftover bee sting, man. I haven't been stung in many years -- enough that I'm probably no longer allergic, just still scared mindless by the wee buggers, especially wasps and hornets -- but now I wonder, too, if the DMARDs that suppressed my immune system enough to allow me get infected so quickly from the dog bite might also be a danger regarding something as common as a bee-sting. (shudders)

It's something to ask my rheumatologist about when I see him in September. I hope that when you see your's this week, he'll OK the Humira so you can get started on that. And fingers are crossed that it will give you lots of relief so you can ride that bike whenever you want and as far as you want.

Hey Wren, thanks. I have not tried Tramadol. Honestly, I don't take much for of anything for pain relief. I can't believe that this sting spot is taking so long to go away, guess that says something for my RA meds shutting down my immune system. I'll keep you updated on how it goes Wednesday.

Have you turned Humira? I have had good results. I am sure there are other options. You just have to keep looking.

You sound glum which is not like you but we have those days and you took the right approach but getting up and going out anyway. We all have good and bad days. Sometimes I feel like there is this big black cloud following me everywhere I got. Yeah, RA is depressing. However, when we feel like this (I blogged earlier about this), this is the point before we are close to the breakthrough. The end of this emotional drag is coming. We to find some way of clearing our heads, making sense of it all, and getting through it.

You will get past this obstacle. You have come this far and there is no turning back my friend.

Lana, I have been glum over the last few weeks. I know what you mean about the black cloud, I try not to let this stuff bother me, but somedays it wins. As a matter of fact, Humira is what I was planning on talking with Dr Branum about Wednesday.

I know, but then again, I don't have a best side. I debated over putting it up or not, but swallowed my pride and put it up to show people how the RA drugs deplete our immune systems. The photo was taken a full 2 weeks after being stung and now a full month later, the swelling is gone, just a red dot where I was stung remains.

About Me

I live with a chronic disease (RA) but still ride all that I can. Riding is my therapy. RA is a strange disease to live with, one day it is all I can do to get out of bed and walk to the living room, the next day I may go ride 150 miles. I do not live or ride pain free but will not give up on enjoying life. I have been reduced to adventure riding, the least strenuous type of off road riding. RA limits my mileage to 150-200 miles a day. I currently own a 2013 KLR650 which I ride every chance I get.